NOLA in September?
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Ladies, Tomorrow will be 3 weeks out from my stage 1 DIEP. I remember reading in the posts from several different gals that 3 week point was a difficult one. Well, I seem to hurt now more than I have yet. I tire easily and by afternoon I'm ready to plop down on the sofa for the rest of the day! This isn't my style at all. Is this what any of you have experienced? Emotionally, I'm ok-sick of these 2 hip drains but other than that.....now I'm getting discouraged because I don't feel as well as last week! I'm healing well, no infection, fevers, etc. Just no energy and quite a bit of discomfort! I wonder when this will pass?????
Nordy, I am so sorry you must continue your fight w/ insurance!!! You are a strong woman who knows what she wants and needs and you have helped so many of us w/ your strength and compassion-now we are here for you! We will support you and be here when you need us! Big HUGS to you! Call me!
KerryA, Sounding very positive!!! Hurray for you! Please keep us all posted!
I'm looking at stage 2-does that mean I have to go through the entire insurance approval process again or when The Center starts the process of approval for stage 1 do they present stage 1 & 2 as one surgery completed w/ 2 stages? Hope that makes sense! Thanks! Katiejane
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Three weeks was awful. It seems to be a combination of discomfort and had-it-up-to-here! I turned the corner at 4.5 weeks and it's getting better every day. I completely tear up every time I catch myself doing something productive & feeling no pain. It's so good to start feeling normal again. During week 3, I treated myself to some good books, a chick flick, and lots of naps. How many month-long vacations do we get? You will turn that corner soon!
Nordy, I like the idea of getting the help of petitioners and the Attorneys General. LE activism! I understand that you are probably so burnt out on this fight. I really hope you can make it work!
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Besa.. I agree with your point that MRIs are not experimental in general, just in my circumstance. A how to book would be great!!!
ttay...Once you start the process in NOLA, they will give you instructions for how many pics and what views they need...0 -
Checking in... You know that you all are sooooo wonderful, right???
Betsy - thank you for the link to the article - I have seen it... I wish it was written just a little more in the positive light so that I could have used it... but it is all good... someday, right?!
As for my insurance - they are a self funded policy, so the state insurance commissioner does not oversee it - it is under the Federal govt. The policy is written by the HOSPITAL where my husband works, then they have what is supposedly a third party to administer and pay claims. However, that third party is also owned by the hospital... I thought this may be a conflict of interest, but it turns out that when a company is self funded, they are not required to use a third party at all - they can administer the policy themselves if they choose. Anyway, I will likely appeal again this year - we are only allowed two levels of appeals - after that they are exhausted and you cannot ask for anymore for the year. I have tried both routes with these guys - trying to invoke empathy/sympathy and also using hard core medical evidence. Remember this denial is simply for the TESTING required to even see if I would be a candidate for VLNT. This is not even the surgery itself. I found article after article regarding the benefits of lymphoscintigraphy, even when there is already a clinical diagnosis based on circumference. Last year they tried to tell me I didn't have lymphedema - that they had no documentation of it (totally rolling my eyes here) - now they say that I do indeed have it and that clinical diagnosis based on circumference is sufficient. They also tried to tell me that I had never had cellulitis (WRONG!) and that my arm has responded well to conventional therapy (WRONG!). I have argued my case on all points - to fall on deaf ears... or maybe I should say blurry eyes...Their job is to deny, deny, deny... and they do it SO well. They make me nuts because they go around saying what a great breast center they have at the hospital, yet deny their employees reconstruction via free flaps -- they told me initially and another lady that works there that we could get implants... or a TRAM. I managed to fight and win - my friend did not. They flat out turned her down. I am going to try... and I am going to call the US Dept of Labor (they oversee self funded policies) and then go from there. There is a PS at the hospital that does a lot of implant reconstruction, but he fights for women's rights regarding insurance and reconstruction. He is employed by the hospital... I don't know if he would advocate for a surgery that is not yet considered standard of care and has few documented studies showing the benefit. But I am going to try...
On another note... my bro-in-law is a project manager for a large architecture firm. He was telling me about a group of doctors and researchers that intend to open a stem cell treatment facility where patients can go and pay out of pocket for treatment. I asked him to inquire to the researchers about growing lymph nodes from your own stem cells in a petri dish so that they could be transplanted. I have not heard back... but maybe if he asks it will be just enough to get someone thinking about doing just that...And if they do, I hope they hurry!!!
To those of you just starting this journey to NOLA - I can tell you that I am grateful every single day that I got to go there for my reconstruction after failed tissue expanders. They are THE best. And good for you for researching! My local PS just referred yet another patient there (I think this is three or four now) based on my results. That in itself speaks volumes.
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ttay -- These were the instructions sent to me by Carly at the Center. Photos tonight!
Photo Instructions for Patients
Please take photos with only a small pair of panties or a thong on.
Take photo from the neck to right below the knee.
Front and back view:
Place arms at side slightly away from body For back view drop panties to ankles
Side views: Take view from both left and right side Bend arm closest to camera at the elbow and place it behind the back at the level where bra would be.
Hope this helps ..... Maggie
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Nordy... Hospitals (or any employer) hates bad PR... Have you considered having a third party (ie BCO members) riting to them to petition for you? Perhaps their reputation is important to them and when it involves potential future patients they might be more inclined to "listen" than just one lone patient. Or get "7 on your side" the news crew to fight your case.... LOL... Of course if this is your husband's employer that can get sticky.
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Thanks so much for the information. Surprisingly, I did pretty well in the pictures I took.
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sassy, glad your consult went well and you knew immediately you will have recon. breast surgery. It took me a week to make my decision, then went on and scheduled it. Good to read that our 'breast friends' here are addressing some of your concerns. I still have a few myself. Wondering about stage 2 compression garments. I was told I will need to wear it some two weeks after stage 2 surgery? I will need to wear compression garment after stage 1 but not sure how long? I was told that stage compression was velcroed and could be adjusted, but that stage 2 compression was not. Input please? Also with regard to breast bra for recoupment, I have costochrondritis, painful in chest area. I still have concern about wearing some type of breast bra during initial recoupment and asked Dr. D. about it. He said he doesn't think I have to wear a bra during healing, but not sure on that as well.
Katiejane, sorry you are going thru some difficulty 3 weeks out with your DIEP surgery. Glad to hear tho that you are healing nicely and with no problems!
Wondering how Ann is doing in route back home, and hoping all went fine.
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Naturegirl... Compression for DIEP can vary (sometimes its a girdle and sometimes is a binder.) I had a girdle, but I also hip flaps in addition to my DIEP. My girdle for stage I had hook and eye and zippers up the side so that I didn't have to pull it up over the drains, but could secure it in place without pulling. The girdle after stage II was very similar, just a different brand. After I lost my drains post stage II, I bought another brand called Marena that you pull on, but the fabric is very comfortable, so I switched. Marena also sells the kind with zipers, but they are expensive, and the Center gives you the girdle, so I didn't want to spend the money. Hope that helps.
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Reposting ( originally posted 7/15)this for y'all...
http://www.plasticsurgery.org/News-and-Resources/Center-for-Restorative-Breast-Surgery-Joins-ASPS-Jewel-to-Raise-Breast-Reconstruction-Awareness.html
Go Nola!0 -
Naturegirl, I had DIEP and was told I didn't need to use any form of abdominal compression post-op which is a good thing because I was horrified when I saw that black compression girdle!! I know I will have to wear it after stage 2 but atleast it will be cooler weather by that time! It still looks horrible to me though!!! Katiejane
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thanks Marcia!
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Sassy -- was that you in a solid lavender top in the Center lobby on Monday? You and hubby were following Vickie around -- I have not met Vickie, only talked on phone, but someone said her name out loud. Wish I had met you! At that time I was in a little distress (but not showing it outwardly) about whether Dr. S would address the symmetry problem right away (as a stage 1b) or have me wait. He is always SO nice, and I was just praying it would all work out.
We got back home from NOLA this afternoon -- drove to central Florida. So good to get settled in and focus on recovery. Because of the whirlwind second surgery, I am feeling so exhausted now. DH is taking care of everything.
I sympathize with the insurance issues several of you are discussing. I hope there will be some breakthroughs to take the financial stress out. [edited to remove comment on my own bill]
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I think I've heard more than one of you mention this, but I don't recall a remedy or conclusion about it -- it's about the DIEP abdominal scar, 9 days out for me. The center of it, just a couple inches below the belly button, is dark, scabbing, and the skin looks like it is dying, necrotic. Dr. S told my DH to continue putting betadine on the area even after being finished with the swabbing of the other incisions in general. He didn't explain further, and we were on to other topics so I didn't think to ask more.
I just don't like the way it looks--rotten! I guess it gets revision at stage 2, but it is getting wider, so wouldn't it require a whole new pulling up of skin with tightness? Have any of you had this and it turned out fine? I can wait 5 months, but if there's anything I can do to prevent it getting worse, I'd like to do that!
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Ann, my ab scar was very high up, way higher than I wanted, so Dr. D did a revision at Stage 2 and was able to lower it way down. Mine didn't get wider, but it was very red and angry and now you can't even see it hardly. I used Mederma cream religously, but I hear that how you scar can be very genetic.
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AnnAlive- I was always calling the Center with questions - something I am good at :-) If you are concerned about exactly what is going on with the incision why don't you just ask the nurse who is handling your case. She should be calling you at least once a week while you are home anyway or you can just call her. Even if Dr. S. didn't get a chance to explain furthur at your post op appointment there is no reason why they can't explain it now. I had a very high and wide abdominal scar left over from my problematic DIEP done locally. Dr. D. lowered it and made it much thinner. (He did not pull me very tight when he fixed things. I could stand up straight, etc.)
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Ann, I agree, you really might want to call the center, i've called with lots of questions along the way too. Also emailed photos at various times when I've had concerns. The center of my abdomen was a mess, very bad blistering gooey reaction to steri-strips. The scab did turn black, but since I'd never seen necrosis, it didn't cross my mind to ask if it was necrosis. My sister, a surgical nurse, was with me until the day before discharge and didn't seem concerned about it, nor did Dr. S. I believe it was one of the photos that I emailed though. I did continue with the betadine as instructed and used small sterile pads on it to protect it. The area has gotten much smaller, maybe from over 1.5 inches to less than about 1/4 inch now. Hopefully you can call and get some peace of mind.
One thing I've noticed along the way with this entire cancer journey is the nagging worrying can really get to you and it's always SUCH a relief have an answer. I worried for over two weeks about a seroma, and even though they assured me that it probably wasn't, needed to find out and know for certain. Was SO relieved when I saw someone locally and knew for sure. Then I could move onto the next worries: ob/gyn for pelvic area worries (worrying for months) dermatologist for skin check, colonoscopy. Getting reassurance from the ob/gyn was like a one ton weight was taken off my shoulders.0 -
Katiejane, I was interested to hear you say you had a dip in energy approaching the third week, because I am just slightly behind you and felt noticeably more tired today...also emotional, which is not really like me...at leat I have a heads up Of what to expect.
Nature girl, when I had my post op at NOLA, my PS was out of town, so I saw Dr. D. I asked about the binder because all my info from Dr. M talked about wearing a binder after DIEP. They were like, " oh, if you want one, we can give you one", which left me kind of confused. When I talked to Dr. M about it, she said that the NOLA docs have changed their position on wearing the binders after DIEP, and said I could wait until my drain was out if I wanted to. I too received a heavy black binder and thought , " no way do I want to wear that in ninety degree heat", so I have just been wearing a panty girdle during the day.0 -
Florafarm, I remember reading some posts from gals who were ahead of me and they all seemed to agree that week 3 was a difficult week, tired, emotional, and some said they were having more discomfort than before. Once that week passed, they said they began to feel better and continued to heal. So, we need to hold on and remember, this too shall pass!! Warm Hugs to You! Katiejane
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I want to pick all this glue and scabby stuff off. As bits keep dropping off, the incisions look fine. No glue left on my tummy scar, just the flaps. Any suggestions?
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Anita, I feel the same!!!!!!!!!!!!!!!!!!! But no picking!!!! Mine is peeling off as well and occasionally it will catch on padding, undies, etc. I will then cut the lose part off if it's hanging. Also gettin' that healing itch. Hard not to scratch but sore enough to remind me hands off!
How are you feeling? I still have both hip drains but I think I will get to pull one this weekend. What is the magic output # for a 24 hour period to pull? HUGS! Katiejane
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Katiejane, Dr. D wants <20CC/day.
Do you all shave under your armpits? I used a razor today then read to never use a razor on my SNB side. Yikes!
How long after Stage I did it take for you to get back to cardio exercise?
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I use an electric razor only under my arms. Not the same but because I have limited sensation I do not want to risk cutting myself. I have a friend who uses Nair type product and likes that.
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I am very careful with a regular razor under both arms. I just couldn't get into the electric razor after all the years of underarm shaving in the shower. So far so good, it's been 4 years...
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Me too. Razor both pits! One of the best things (along with warm squishy boobs and normal position of pec) is that the dent from node removal was filled..... yay.
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That is good to hear! I've NEVER cut my armpit shaving, but I hate to take an unnecessary risk too. All I know is, after nearly 6 weeks, it's so nice to have freshly shaved pits!!! Fortunately I live in western oregon where no one would notice anyway.
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I use razors too...
And Anita... at some point picking off the glue is ok... I think they suggested using a loofa or washcloth to wash it instead of just picking... if you use a soapy rough washcloth, and wash in circular motions, then it should come off if its ready to.
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Just a quickie question---the past few mornings when I get up one of my JP's has totally lost it's suction and is completely inflated. I've triple checked all connections and all appears normal. Any idea what this means or am I just full of hot air!!! Normal?? Katiejane
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Is the plug still in?? I had a drain bulb that the plug wouldn't stay in, so they gave me a new bulb.
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bdavis, Yes, the plugs are in and all tubing is connected. I'd like to think there just is no more fluid in there!!! katiejane 0
